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CT Scan results, 2 months after last Y90 very bad

KarenMG

Posts: 109
Joined: Jun 2017

Mar 20, 2019 - 2:47 pm

Saw my Oncologist yesterday, he brought the hammer down! He was grim and tried to take every last bit of my hope. My scan results were bad indeed. I have spots all in my lungs now, I only had a couple of tiny ones before. There was a lot of new dark areas in my liver.

The doctor actually told me that the two Y90 treatments and the ablation from last year on my liver did not do any good whatsoever and I need not go back to that radiologist for any further treatments. He says that any more treatment would not most likely help but only cause me more symptoms and pain.

The only thing that he had to offer is for me to start the Stivarga or he can start basically palliative treatment. I'm at the point that I dreaded to see coming. Either chemo now or just pack it in, you're done.

The Stivarga can cause horrible side effects:

Warning: Hepatotoxicity

Severe and sometimes fatal hepatotoxicity has occurred in clinical trials.

Monitor hepatic function prior to and during treatment.

Interrupt and then reduce or discontinue STIVARGA for hepatotoxicity as manifested by elevated liver function tests or hepatocellular necrosis, depending upon severity and persistence.

This is only ONE of the side effects. It can and does cause serious skin problems, hemorhaging, increased infections. The list goes on.

I don't have a good feeling about it at all. The way my body reacts to treatments, is to reject them basically. I feared strongly that the Y90 treatments would just make me feel worse which it has and not help which it hasn't.

So the Doctor planned for me to start taking it today, which I haven't. I just cannot bring myself to add something toxic to my body that I am just working day to day to maintain and not be sick.

Just curious as to what others might do here if you were in my shoes. If you don't mind sharing that with me.

I am thinking more like taking my bucket list trip to Hawaii, come back and start from scratch maybe with a different Cancer center.

Karen, what horrible news! I'm so sorry. I have mets in both lungs, my liver, and again in my colon and nobody has said anything about losing hope. My last round of chemo seems to have made a big difference according to the blood tests. I'll know more in May after my next CT. I'm on immunotherapy, is that an option for you?

I am so sorry to hear your news, Karen. It never fails to be devestating, and you're allowed to run the gamut of emotions.

What would I do, you ask. First off, the decision I would make not facing it, would probably be totally different than the decision I would make if I were facing it.

If I had been through what you have been throguh, I would have a serious talk with my Oncologist about my chances of survival. I personally do not want to be tied down to chemo, knowing that I am going to die anyway. Now, if I were really facing it, I don't doubt my desire to survive would trump, and I would go for treatment.

I guess I was no help whatsoever. Sorry about that.

I wish you all the best. Follow your heart and do what is best for you.

Sorry about the bad news. You ask, "what would you do?" I think about that issue with every test and every doctor's visit. I would definately make the bucket list trip to Hawaii. I would definately try to live every minute of every day to its fullest. I would do all of the natural things available to me to prolong my life while still maintaining quality of life. I would drink a lot more. I wish you all of the best with the challenges you face.

I'm sorry Karen, that's a hard place to be in, what's the right path now is a tough call. I got through my treatments fairly well, so I'd always try the next treatment, but you know your body and what your mental/emotional state can handle. I wish you some kind of peace with your choice, and Hawaii certainly seems a good place to let it go for awhile.............................................Dave

I tend to agree. Just have to pick myself up off the floor where I've been since Tuesday. He seriously knocked the wind out of me with the way he gave me those scan results! Not that I wanted him to sugar coat but geez...you had to be there I guess.

If I can feel a bit human soon, I maybe can plan a trip. I can afford to spend what I want on the trip, so First Class all the way is the only way I could go, since that long flight would be rough. I would probably have to stay an extra day just to recouperate from the trip.

Thanks so much for the advice. Wish I could drink for sure but I cannot tolerate more than 1 drink, but hey it might work.

So sorry to hear the news. It has to be devestating to find out that the treatments you received didn't help. Go to HI and enjoy yourself and like others suggested, go have a good talk with your doctor or seek out that other opinion. Right now it's not going to hurt to get another point of view. Go enjoy that trip though.

I am sorry your results weren't better. Obviously Hawaii. Why would you not? i would + live healthy as you can + 2nd opinion , love your new photo. here's some links that maybe be helpful from this side of the world. xx

Plan a trip. Go walk with the beach, see the sights, relax for a bit. Then come back and decided what to do next. I don’t mean to mak it sound easy because I know it’s not. I’m just saying take a beautiful break and regroup. When you com back get another opinion. Take a different tack, as my dad would say (he was a sailor). I’m so sorry for this news.

Let's start backwards for a second - go to Hawaii and do whatever else you want. BUT (and this is not easy) do find someplace else and research things as part of this. (Cannot remember where you are now.) MD Anderson, Sloan Kettering, Dana. Look into options and also trials. Now the long part -

About a year and a half ago my cancer came back yet again. Inoperable. And has been spreading. By a year ago it was growing like crazy. They stopped counting the lung mets. Have tumors in my spine and back. And lymph nodes. 2 months or so ago scans show some things were still growing despite the chemo (but others stabilized and a couple may be dying.) Then they told me to add Avastin. Reading the risks scared the h--l out of me. The risks of all these drugs are horrifying if you read them. But I added it.

All that being said there would be a point where I may turn things down. Each of us have different experiences. The thought of another abdominal surgery scares me (and I only had one.) I have been really fortunate overall in terms of handling ttreatments. Or just ignoring how bad treatments are (My wife sees how it is more than me and that I underplay it when describing it to people.) I feel pretty bad at this point 7 out of 14 days when cycling through. But doable. I sleep. Mild nausea. And a ton of the rest. But to me tolerable. And on the bad days I stil am able to manage to do something even for 15 minutes to an hour. Exercise of some type. Walking, something. I may then sleep for another 14 hours. But it is a cycle I can work through. But my first treatment of this round of chemo (FOLFORI) was BRUTAL. I was so sick that I told my wife I was done with treatment if this was how it was going to be. I was scared beyond belief of the second treatment (which was delayed) based on the first treatment. But they dialed down the cocktail and that worked. Have been "fine" since.

A scan last week showed tumors in my spine growing despite radiation treatment and the chemo. But my doctors keep on going with the positive in all this. Not painting fantasy, but saying could be continuing inflamation as tumors die and whatnot. Who knows. There are some other bits and pieces going on, but the above gives the idea of where I am. An appointment next week may turn things further to the negative side. Will see.

What I would do is

a.) Find other doctors/centers. Als0 Oncologists are not interventional radiologists. And no matter how much they talk or not, you never know. Long story short, after four years plus of being in this, the more I see the more I have determined that you need to fight and push doctors and get answers. And I am going to one of the best places in the world for this.

b.) Look for trials, including immunotherapy. I have some things that immunotherapy normally does not work on. And I was in a trial that did not work. But there is no downside to this, other than not going through regular chemo which may help (ties into point c below in terms of decision making).

c.) Find out disease progression pace. There are times where the cancer blooms/becomes fast growing. When my stuff came back in the lungs (I was inoperable due to lymph nodes and at that point maybe a dozen or so tumors were situated in lungs, no point for lung surgery) that I had time to decide for chemo. That it was okay to wait and watch. That chemo now or later would not really change things. About a year later when things went crazy growth, it was chemo time for me. So maybe the decision to get on chemo right away is not needed. That starting now or a month down the road, two months, whatever down the road, may not make a practical difference.

d.) Go to Hawaii, ESPECIALLY if point c is in your favor. Getting away from the decisions and grind can make the decision easier. Or charge your battereries, as it were, for the next parts of treatment. Or give your clarity about your decision.

e.) Try to exercise/move as much as possible.. I should be on the couch on oxygen based on my situation. Instead I am staying ahead of things still. I have run over 20 miles this last week on the treadmill and outside. Not easy on some days, can take me two hours to get off the couch to after sitting down to put my sneakers on, especially close to infusion days and disconnect day, but it is buying me time still a year and a half into this recurrance. And as Sandia mentioned, look at alernatives to add. I am taking mushorroms and other things. There are some cautions on some drugs, but overall low risk/high reward (and also ties into point c). Accupuncture has helped me with the ressidual back pain from the tumors, which is minor at this point. (Radiation did take out part of the tumor which seemed to be more responsible for the pain I had.)

I am probably biased at this point based on the posts you and I have had, and to the extent that I am painting it as get treatment, I apologize. All of us are dealing with different circumstances and I understand there is a time where it is proper to stop treatments and the rest. I just hate seeing it, even when it is the proper decision, and probably more so with my friends I have met during all this and being part of the boards.

Again, I am sorry to read the news. But you will wind up making the proper decision for you.

The only thing I insist on (like the others) - Hawaii!!! Helicopter tour over the island is great Going around the volcanoes and seeing the steam as the lava meets the ocean is incredible. Macadamia nuts and coffee also :) While I cannot officially condone Sandia's regarding drinking, my official medical opiinion is for a bunch of Mai Tai's on a beach in Hawaii while looking at the ocean (added bonus for sunrise and sunset) [DISCLAIMER JUST IN CASE: My official medical opinion is neither official nor medical. And I am unofficially condoning Sandia's opinion. If a glass of wine is something you like with dinner, or whatever, why not, even if we are not "supposed" to.]

I appreciate and pretty much agree with all you've said. I agree that the trip is definitely in order. I cannot bring myself to try out some new toxic medication when I feel pretty much like death warmed up already.

I will take a trip with definitely first class plane seats, everything first class. I can afford it so why not? I do need to charge my batteries!! Maybe get a new perspective on things.

I am done with this Cancer center. In the 2 years I've been going there, I've had some very bad experiences with doctors and nurses. They are either overwhelmed with work and patients or just complete assholes. I try to be understanding because I am a retired nurse and have been on both sides. Maybe that is why my expectations are high.

So when I can pick myself up off the floor emotionally, and feel like I can make the trip I will go and start over with a new treatment center. I wanted to try MD Anderson, I always have heard good things about that place.

I thank you truly so much for all your comments and suggestions. Time for a new plan for sure.

As to the docs and nurses - screw them, there is no need for that BS (I am a volunteer EMT for quite awhile. So when health care providers are out of line, it really pisses me off. When I deal with patients I treat them as I would want my family and friends to be treated. Granted it is a different thing for nurses and doctors in terms of longer contact and all the rest, but patient care is paramount. Especially when dealing with patients who have cancer.)

Karen, I'm very sorry to hear of your situation. If you are no longer happy with your onc., by all means get a new one. I'm going to be blunt because of my experience with my wife. Go ahead and take that trip. If you are strong still, go ahead before this desease takes your strength away. It may not be comfortable, but you'll get to check something off your bucket list. And, that's the whole reason why we are here. To experience life to the best of our abilities. Enjoy life while you still can. Things can chage rather fast.

To hell with it! Get on the phone with your travel agent and book the first flight out of here. You deserve it you need it! Forget about everything for a little while and enjoy yourself! A couple of weeks isn't gong to make any bit of difference so when you get back then you can see a new doctor. Live your life to the fullest in Hawaii, Eat what you want drink what you can tolerate, hire an escort even! (well maybe not that but you know) Go bungee jumping or parasailing, things you have never thought of doing because you were to scared to. Get it all out of your system everything you can possible do, then come back refreshed a renewed either to find another cancer center or just to get your affairs in order. You will know what to do!

I am so sorry you were given a horrible blow by your doctor! It really sucks, but just because he thinks one way doesn't mean there isn't someone else out there with a different approach. You are always in my thoughts and my prayers Karen. I pray that this is just a little bump in your journey and that there is more to be offered to you. Hugs!!!!

Yes, that is my plan. I'm just still trying to pick myself up off the floor after that office visit with Doctor Death. Truly I know there has to be a way to deliver bad news without crushing someone's spirit. I didn't mean sugar coat anything but he really has almost broken me down. Last night I was having thoughts of really wanting to hurt myself and get it over with. I was panicking, my heart racing and my blood pressure sky high. I asked my son to come over and help me out. He thouht it would be fun to aggravate me to get me out of it. It didn't work, he just made me super angry with him. Not just a joking way of aggravating me but seriously criticizing me. He has aspbergers so I think he is at a loss at how to deal with me. Nonetheless...

I have to crawl out of this hole of depression, I cannot even the gumption to go clothes shopping and for things I would need for a trip. Or to go to a travel agent. I'm pretty much stalled. Still in my nightgown at almost 2 pm. Crying a lot. I know I have a lot of anger right now, but thinking back of how I've been treated at this cancer center really makes me super frustrated. If any way possible, I plan to not go back there. I'm thinking about a hospital like MD Anderson or possibly Emory or Duke, just for a second opinion if anything can be done. AFTER my vacation.

The plan was for me to start taking the Stivarga I already have, that was to start Weds. Ha! I cannot bring myself to take a drug that could very possibly kill me right away from all I've read and at the least cause bleeding and serious skin problems guaranteed to make the rest of my time absolutely miserable. Liver toxicity and failure, leading to death? Nope. So the cancer center has scheduled me appointments for 2 weeks and then again in 2 weeks to monitor that drug. Guess I'll be cancelling all appointments with them.

I also looked into what kind of help I might get from the social worker at the recommendation of my therapist. She pretty much acted like I was crazy. Also I found out that they are increasing their support groups to 3 times a week, up from once. But now they are going to charge you like an office visit? That is some BS I say. And this is a Catholic hospital! Yep, I'm about done with them.

Any ways, I am really hoping that I can rise up and get out of this apartment, go shopping and get packing for this trip. I gotta do it!

Thank you so much for your support and positivity right now. You are a Godsend.

I don't really have much advice other than get another opinion. My doctor also was so harsh when he delivered the news of my recurrence that I was thrown into a depression, and the way he told me, I was not even sure I would be around in a month. His harshness kept me from asking much. Our situations are different, but I can say that I got a second opinion, learned of options, and although I did stay with my doctor, that second opinion gave me hope again. Also, if you can afford it, take the trip to Hawaii regardless of the choice you make for tretament.

i am sorry to hear about your son. males with aspbergers can be to blunt which is the last thing you need at the moment (my friends son has aspbergers and i sometimes have to remind myself it's the aspbergers not him when he is to blunt but it would be to hard for you when you are not well. last thing you need to hear).

having said that can he book trip for you? or anyone else? make him/some one else do the work for you, you rest up ready for holiday.

Also you might want to try fish oil & vitimin B capusules for your depression. they take a while to kick in but can be helpful.

Thanks, I needed to see that. It seems no photograph from there is ugly, except when the volcano was erupting!

Pretty much I am going with this plan to take the trip, I have to do some shopping and I have not been able to even drudge up the energy to go for one item. I think it is my state of high anxiety and depression. It is getting better now. The idea of the fish oil may work for me now, before all this I tried it and it caused terrible diarrhea, but since I seem to have the opposite problem now it might be just the perfect solution. Vitamin B also caused me strange feelings but things have changed with my body AND brain, so also worth a try.

I still feel like I want to control as much as I can, so I am going to try to do the booking myself. I am also going to check out a reputable travel agency. Since my son that is aspy is the one going with me, I am going to book separate but hopefully adjoined rooms. I am really anxious about flying too considering the way the world is now, but if I am going I need to stop overthinking everything.

Secondly, I am truly done with my oncologist and their whole system. He could have not been much worse at delivering bad news. It seemed like he was either tired or angry and just kept repeating how bad things were with no offers of any treatment that could possibly help. It took me 2 days to feel like even talking or moving my body after that, I felt devastated. I don't think I can handle another one of his "chats". They were also very snappy about renewing my pain meds, stated I should have known better than to ask at this time! Yep, I'm done! So, I will seek out another opinion at hopefully MD Anderson or some other highly reputable hospital or Dr.

On a side note, my CEA has jumped to 712, I found out via an email. No call from the doctor. I also got the written CT results. I am a retired RN so I pretty much can comprehend the gist of that, it sounded no where near as bad as my doctor made it sound. No, he does not know EVERYTHING, he made an incorrect estimate of my survival time way over a year ago. Now I don't trust him any longer. Nuff said about that!

So hopefully I can go have a wonderful trip, stay as long as I want and come home when I get ready. That should give me plenty of time to relax and get a reset.

Thanks so much, You and everyone here has been so helpful.

I finally feel like I know what to do and I am going to live my life as fully as I can for as long as I can.

To hear of your horrible treatment by your doctors--honestly hearing about experiences like yours and many others on this board with the medical community makes me distrust the whole cancer "industry". I have had some truly callous and unkind doctors in this journey, especially Interventional radiologists. Because of his screw ups with ports I can't wear a backpack or purse and have constant pain in shoulders, not to mention my chest looks like it has pot holes. WHile he is driving around in his 250K Porsche. I hope you have a fabulous time in Hawaii--believe it or not I was born there! Take in all the beautiful sights , sounds and smells and hope you recieve much Aloha there! Worry about this cancer stuff when you get back!!

I’m so glad that you were able to get that second opinion and it made you feel hopeful. I’m actually really out of options in my town. So it would be some traveling involved plus gathering my records. It would definitely be worth it to get a little hope back in my soul! I don’t think my psyche can handle another one of his “chats”!

I have to travel 360 round trip to see my Oncologist, Radiation Oncologist and Hospital. No other options here in town. It was a long hard haul during chemo, and I had to stay in the city for radiation, but it is doable.

Wow, that is a haul! You know MD Anderson is in Houston Texas which is 944 miles from me so that would be flights and hotels. Atlanta Georgia or Duke University hospital would be 3-4 hours I think one way. So...not sure which way to go.

Wow, you have really perservered to get treatments. I wish I knew if doing that would be helpful to me. Nobody knows the answer to that for sure!

i drove to an MD Anderson and it is about 1000miles. You may need to find another local oncologist. Things may start going south and you may need to see a doctor. If you go to a hospital they may need to know who is your oncologist. Just try another local guy or girl. I am in favor of MD Anderson. Butt.

Thank you Karen. you inspired me so I have booked myself a trip to Japan in May. Have you booked your trip? As for flying i ask my doctor for valium, few valium, few vodkas next thing you know you are there. 10/10 recommend for travelling. even more blissful in 1st class . roll on cherry blossums n palm trees. xx

Karen, I'm just wondering if you'd need company for that trip? I've never been to Hawaii and it's on my bucket list. Ha ha! Seriously, anyone who is on a long flight please make sure to get up several times and walk around and change your position in your seat regularly. You do not want to get a blood clot.

Pack your bags...lol. Although right now I'm still trying to pick myself up off the floor after my Oncologist crushed all my hopes and dreams. It's not his fault that I have cancer but the way he put it to me was a message of no hope. I've heard of patients that totally give up after such a "talk". I am going to do my best to not ever to have to speak to him again, but not sure what I'm going to do yet.

I would love to have a new friend go with me on my big trip, it would be interesting for sure. I've been known to do whatever I feel like it.

I know my advice may sound cruel. You indicated that there are some issues with family members. You may want to talk with local health care agencies and select one and put your info on file because the moment can come that you will need someone care about you. It is very expensive. I already selected a home care agency and met with a local hospice because I had some questions. I know it is hard. Butt.

My therapist in fact, after getting to know my situation is strongly recommending that I go with Hospice now for support. I am thinking about it but it seems a bit premature. It makes it seem like the end for sure. I don't know if I could justify going on some big vacation and driving my car around doing things AND be a Hospice patient. I worked with Hospice years ago, I don't know how things have changed.

I'm just amazed at how I was planning things and making an effort to live my life fully but that Doctor just crushed my spirit. After being an oncologist for years, it seems he could learn how to be gentler somehow. I'm really not happy with him right now. Oh well, it's sure not the first time.

Thanks for the advice but I have already been looking into home care for myself. I know my sons would not be able to take total care of me.

Karen. f**k that doctor. remove yourself from his negativity. book your holiday. and while you are in Hawaii get a 2nd opinion inbetween cocktails & lazing on the beach or by a pool

And here's another suggestion. have you thought of going to Thailand for a holiday/2nd opinion/treatment? I ask this because when i got a total mouth reconstruction i went to Thailand to have it done because the cost was totally out of reach here in NZ but Thailand has 1st class hospitals, has a first class reputation for 'medical tourism', amazing clever and kind doctors, costs 50-70% cheaper plus amazing holiday tropical beaches etc. (the hospitals are like resorts BTW). If cancer treatment wasn't free here I would have gone to thailand . added bonus in Thailand massages are $8 for an hour & the food and shopping are out of this world. this hospital is in Bangkok which can be in ya face but is all part of the experience

Anyway this is the hospital i got my dental work done at. They were recomended by my Thai friend and my NZ friend who does medical tourism tours. they are fantastic. you can talk to them online plus their English is great. they will put 100% into your care. beautiful people. i love them. As well as cancer treatments & fantastic cosmetic surgey they do things like hyperbaric oxygen therapy etc.

Also this came to my attention via FB & it made me think of you. (heaps of thai stuff pops up on my FB page because Thai friends) the hospitals it is associated with are reknown for being some of the top hospitals in Bangkok but if you are interested I can ask my Thai friend what she thinks and what their reputation is in Thailand. any way won't hurt to have a look and a chat online to them. xx

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